A tough week

Despite the stressful day that had been Christmas day I was optimistic that everything would now be straight foward as my mum has had DKA before and thought that was all that was making her unwell.

I have never been in this situation of such uncertainty and worry. When I’ve been in hospital for myself I’ve never been scared because it is always the same thing, the only thing that bothers me is pain from arterial blood gases for example. It is so so hard being on the other side and I would swap places if I could with my mum as I hate seeing her so poorly.

I’d be lying if I said I wasn’t anxious at the moment. She has moved to another ward as the other was an admissions ward and everyday I am being told something different, there is no consistency. She needs to be on a particular ward but it has no beds and this one is not appropriate. It is a gynaecology ward which has turned into an overflow ward, everyone in my mum’s room including herself are being treated for community acquired pneumonia.
Day 1- I was told she has a virus
Day 2- I was told they are doing scans and x-rays the next day, including a head CT scan to check intracranial pressures.
Day 3- mum has had her scans etc, ward has received them but no one has looked at them. They’re now treating her for community acquired pneumonia with IV Co-Amoxiclav and IV Clarithromycin, this is not the combination I’ve had in the past, I’ve had IV Amoxicillin and IV Erythromycin.
Day 4- still no one has looked at the scans results. Bloods are back, mum’s liver function is poor and they don’t know why- suggesting clot on liver? I ask if she needs to be put on IV fluids again as she is very dehydrated I am told no, she keeps being sick still and she has only had about 200ml of water all day, we need about 2 litres a day. Then there are the small things that happen, like when they put up some IV antibiotics they didn’t check the cannula was still working and when it wasn’t going through they disconnected it and let half of the IV bag leak all over my mum as none of the staff had the presence of mind to bung it.
Day 5- (today) I’m told she had a rough night and morning- the IV antibiotics now stopped, she is on IV fluids (Quelle surprise), swapped from Metoclopramide to IV Ondansetron and is still being copiously sick. Very worrying. The on-call doctor was called as I was leaving, I was told that they’re going to do some screening for liver diseases the next day.

I wish I was asleep. Asleep until this is all over and (hopefully) my mum is okay. I keep imagining the worst and I can’t cope with it. I feel so alone, friends are supportive but it is not the same as I’m so very close to my mum. My mum is my mum and dad combined, she is everything to me. My parents are divorced and that was a good thing, I was always more attached to my mum rather than my dad, instead of being a daddy’s little girl I was a mummy’s little girl. My dad now lives abroad, I occasionally speak to him on the phone and he sends me cards and things at Christmas/Diwali/My birthday. This situation is so painful and I hate waking up and remembering that my mum is in hospital and so far is not getting better. The anxiety is increasing as I’m not sure that she is getting the best care and I know this has been exacerbated due to the christmas and bank holiday period. But the frustration is there as simple things of keeping me in the loop, not checking cannulas, dehydration management, checking results are not happening. I wish I was more assertive to get them to take me seriously and stop looking at me like a small child when I AM my mum’s next of kin and vice versa.

Every argument or whatever that we have ever had is now so painful, I hate that I have ever got angry or upset with her.

I want my mummy. x

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I should probably be catching up on sleep but it’s so quiet at home that I can’t relax and I feel I need to get some things off my mind as my mind keeps whirring.

This Christmas has probably been one of the worst. Lonely, isolating and frightening. My mum went into hospital last night (25/12) with Diabetic Ketoacidosis and what struck me most is how difficult it was to get any help. I know not to expect much from out of hours medical care but what happened I think was verging on negligent.

My mum has been vomiting for the past week or so and I got a prescription for antiemetics as we all assumed it was down to a sickness bug, maybe it was initially. She wasn’t able to keep the antiemetics down and then on Saturday (22/12) she complained of feeling dizzy and fell and hurt her shoulder. My mum is notoriously difficult in trying to get her to go to the doctors. Initially there was nothing visible but she now has a huge bruise on it and A&E said its probably a soft tissue injury (they said they’d x-ray it but I don’t know if they did) and became increasingly confused and in pain as well as still vomiting. The past few days have been so stressful. Yesterday, the confusion got worse and I decided that I needed some advice despite certain people telling me to leave it till after Christmas.

I initially rang the Crisis team as they have been involved in the past with my mum’s care and they confirmed my view that the confusion is medical and not psychiatric and told me to phone the Out-of-Hours (OOH) doctors. The OOH doctor eventually rang me back, asked to speak to my mum who was at this point incoherent. He asked me take a blood sugar reading which was 17.6 mmol and told me that he didn’t think it was anything to do with Diabetes and that I ought to phone the Crisis team, though I thought -bearing in mind that the blood sugar reading is basically on fasting for several days, that is a very high value. He then said bring her to the OOH practice and I said that I’m going to struggle to do that and that I need someone to see her urgently. He eventually agreed to arranging patient transport with an up to a 6 hour wait. It transpired, after I read the letter OOH written to A&E containing a transcript of the phone call that he had refused to send a doctor out for safety reasons due to her illness which I will stress has never caused her to be violent or abusive. I’m actually disgusted and appalled that a) he did this without asking me if she was violent/abusive and b) and more importantly- tried to fob me off by telling me it was more likely to be a psychiatric problem than a serious medical problem. I’m just astounded. When we eventually arrived at the OOH practice, there was another doctor and he was very concerned and she was sent to A&E immediately. They confirmed in A&E that it was Diabetic Ketoacidosis (DKA) and she was moved to resus, she had a high level of ketones in her blood and was started on fluids to correct the dehydration, sliding scale insulin, glucose and potassium. Mum has had DKA before, so once they started treating her I was a bit more relaxed and I cannot fault the care of A&E or the ward at all, they have been excellent.

A&E was interesting on Christmas Day. Before I arrived I thought I was having a terrible day, and yeah I was but coming there showed it wasn’t just me. There were hundreds of patients sick or injured. While I was waiting outside resus I saw an elderly lady being brought in and she looked in a bad way, they were doing chest compressions as they were bringing her in and she was intubated. I recall at that time thinking that it didn’t look good and I hoped she wasn’t alone, some time later the resus doors opened again and I saw that she was no longer there and had evidently passed away. Her husband was there and everyone was so sorry, you could tell they genuinely meant it. I thought, how terrible to lose your loved one especially on Christmas day and I was struck by the dignity he showed. Christmas day is something that I associate with spending with your loved ones, a time for family for most.

My mum’s still poorly but she should get better eventually. It’s not the easiest time of year for things like to happen at least from a practical side of things rather than sentimental. I’m exhausted but the world doesn’t stop turning and there are things that need to be sorted out. I am angry with myself for not realising sooner and I feel like it is all my fault, I feel like I’ve failed her as her carer.

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Things learnt.

I’m pleased to write that my eczema is starting to make progress. I went to see Dermatology 2 weeks ago and I have a new treatment plan now, I was offered oral immunosuppression again (which I will write about further in this post) which I refused and an admission to be stabilised which I also refused. For the past two weeks I’ve been going to the dermatology department three times a week to have various creams and ointments applied as well as taking Hydroxyzine tablets (a sedating antihistamine) which is helping break the itch-scratch cycle. I’ve found it hard to adjust to having to fit hospital visits to dermatology or else so regularly into my life again, I found it quite depressing the first week. But my skin is looking better; my arms definitely are anyway, my legs are still pretty awful – like open patches and rather purple instead of the usual red elsewhere. I have to wait until there are no more open sores before they can move onto the next step which will be occlusive paste dressings, most likely Viscopaste and I am not looking forward to this, they cannot currently do this due to risk of infection. They said I could possibly have UV light therapy to control it once I’m better to target the inflammation and also allows them to stop flare ups quicker so my skin hopefully doesn’t keep ending up like this. I don’t feel comfortable with this but have agreed to it for now purely because I’m hoping everything else will work so well that they will decide to hold off on light therapy.

Asthma wise things have been interesting I think, I’m feeling well at the moment but this was a different story about 3 weeks ago as I had an asthma attack triggered by nuts? there were nuts at home because it was Diwali, it was all quite sudden and I had tons of nebs, antihistamines, steroids, used my Epipen and felt a lot better but still dodgy for a few days later like my getting short of breath with short amounts of walking and slightly low O2 sats. I had asthma clinic the day after this episode and they think it was some kind of anaphylactic asthma attack type thing. Clinic was a mixed bag thinking about it now; I had a lot of bloods taken, having a CT scan this week and a few changes to my current meds such as increasing my steroid nebs. Immunosuppression was discussed again and I am still reluctant but agreed to consider it just out of not wanting to be a pain in the bum and agreed to having the blood tests to see if it would be suitable. I went to dermatology clinic a few days later and until then I was genuinely considering it but then the registrar and consultant became so keen on immunosuppressants again on my mentioning of having the blood tests that I felt I was about to be forced into it that I have closed myself off to the idea again. I don’t think immunosuppression is necessary.

Recently I have been volunteering in a befriending role for which I received training a year ago. I have found this surprisingly difficult and I have learnt not so good things about myself. I considered myself a very empathetic person until recently but I have found that the person has weighed me down and the dynamic is different to that of a friendship or other relationship with a loved one or else someone you are genuinely interested in rather than feeling obliged to be. I am finding myself to be quite a distant person, when I had initially so empathised with this person when they had originally emailed me, meeting with this person in person changed my feelings. I find myself becoming irritated and uncaring. There are reasons for this and primarily it is because it appears this person is stating certain things to fit in with me when I have given very little away about myself (during training we were told to maintain some sort of “professional” so to speak distance) I am freaked out by the fact they have found me on Facebook and sent a friend request before they met me (not knowing what I look like), keep contacting me by sending text messages and BBM messages outside of our meets with very whiny messages about what I consider not so significant accompanied by tons of sad emoticons. I have tried to encourage her to save things for when I see her in person but she is persistent. Really it is my fault, I am a non-confrontational yes-person who doesn’t like saying no to people or letting them down. I’m shocked at myself for how little I care about the things the person decides to burden me with. I regret getting involved with this project, the key words I associate with it are burden, obligation and (lack of?) empathy. Don’t get me wrong, I feel bad for this person as I would for anyone in their position however severe or mild their condition, it is the way they go about things to get my attention. Ironically; the more they try to get my attention, the more they are pushing me away, I am very sorry to say.

This I guess self assessment leads me onto questioning my choice of career. I have wanted to become a doctor for a very long time, and I still do. I just don’t think I’m going to get into medical school and I think it is because I’m a horrible person who does not deserve it. I’m not fishing to be told the contrary, it is true, medical schools know exactly what they are looking for and I haven’t been able to demonstrate that in the past and from my experiences with befriending maybe I cannot demonstrate that as well I thought I maybe could. No amount of what I consider excuses that medical school is competitive etc, that still does not change the fact that I have already failed at getting a place to study medicine.

I am not articulate, determined, confident, intelligent or as empathetic as I once thought I was. These things; amongst others, I consider essential to be a good doctor and I am deficient in them. In short, I am not good enough and I cannot get that out of my head. I’ve tried to look at other careers to go into and I can’t find anything because in my (this sounds so cheesy) heart I want to study medicine so much and I need to let this go, fast. I ask myself why I still want to do this and the childish response is that I want to help other people. This career choice would be a selfish one for me personally as if I was ever successful theoretically in gaining a place and working in this field, the impact on my mother would be huge. I would feel guilty and I already do feel guilty about the fact I want(ed) to persue such a lengthy course and career that would take a lot of my time. I’m scared she could become more ill just so that I could satisfy my own happiness. I want to be there for my mum but I also want to be my own person and as I’ve said before I think I’m still discovering who I am.

I am also having difficulties with the whole frustrating thing of some people regarding me as a sick person and I most definitely am not a sick person. I want to be on the other side of medicine and help people both with knowledge I could learn and also my experiences as a patient (and as a carer). I just hate spending so much time, time in outpatients, taking daily medication etc. Sometimes I find myself wanting to snap and withdraw from it all so completely because I’m scared it’s going to take over my life forever.

Normality, is underrated. Simple things of being able to go to university around the same time as everyone else, not having to take so much medication or having to care for someone who relies on me so. It is hard not to take other people’s burdens into your own and I think I do this too easily and therefore I resent them when really it should be myself.

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